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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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Comments

  • bettelou68
    bettelou68 Member Posts: 151
    edited October 2009
    The spine MRI was incredibly painful, both in the noise surrounding my headache, and in keeping still for 45 minutes with what turned out to be cancer at levels T9 and T12 and a small compression fracture at T9. The radiation oncologist said they can do rads for 10 treatments to reduce the pain on the spine, but that the procedure of radiating the skull would involve radiating a lot of soft tissue and scary SE's. The docs have to discuss the timing of the rads, before, during or after chemo, and then we will have to make a decision.

    Tomorrow at 6 AM we leave for VA to start Cycle 3 of the clinical trial. I will start Zometa then as well. Then on Tuesday we go back there to get the PARP inhibitor, BSI-201.

    Tom has been very sweet today and is teaching me the safe use of my new wheelchair. I could not have navigated the hospital today without it.

    Bette 
  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2009

    Bette:

    Sending you lots of prayers, hugs and love.

    Laura

  • NYmom60
    NYmom60 Member Posts: 14
    edited October 2009

    Bette: You and Tom are in my prayers. 

    Jessica: Hope your surgery went well. Recovering from mine which was done last week.

     Hugs,

    Monika 

  • activern
    activern Member Posts: 111
    edited October 2009

    I will continue praying for you.  Love and well wishes.

  • bettelou68
    bettelou68 Member Posts: 151
    edited October 2009

    Home safely from VA. Have to return on Monday for MORE chemo. Need a nap right now.

    Bette

  • cheers247
    cheers247 Member Posts: 57
    edited October 2009

    Hi Ladies, I'm checking in from my bilat mast, R ALND, and total hyst from 10/7.  Let me just say the hyst is a piece of cake compared to the bilat!  I am so tender, especially under the arms.  There is some nerve damage on the R, I have limited sensation from the elbow up to the armpit.  I have two drains, I hope to get them out this week, but will most likely be the week after.  I'll get the path report next week.

    Bette, I'm praying for you!

    Monika, I hope your recovery is speedy and pain free!

    Much love, Jessica

  • activern
    activern Member Posts: 111
    edited October 2009

    Jessica - my prayers for your quick recovery.  Bette: my continued prayers and well wishes to you.  God Speed all.  Love.

  • victorialin
    victorialin Member Posts: 1
    edited October 2009
    Glad to see your post. I prayed for you. Hope you are feeling well.

    Hope you are feeling better and able to hug your kids lots.

    breastcancer.dormitory.com provided me a sanctuary to ask questions, receive support, and share my experiences with others--and, the feedback I've received has enriched my life.

    I am grateful for the opportunity to learn and share at their web site...

  • cheers247
    cheers247 Member Posts: 57
    edited October 2009

    I got my pathology report today:

    2/21 nodes positive, clean margins.  My sentinal node was positive, and so was it's neighbor node.  The other 19 were negative.  I've already been through 5 months of chemo, so when I heal it's on to radiation.  I am having some increased inflammation at my surgical sites, the drains are draining fine, but I developed a hematoma  under my right armpit (ALND site) they drained it today, that was painful.  I still have so much swelling, I sure hope it gets better soon!!

  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2009

    I read Amber's blog and her husband Dan updated on another thread that our dear sweet Amber passed away last night.  Let's keep this thread going in her memory.

    Dan if you happen to come upon this thread I am sorry for your loss.  Please know that Amber will be missed and was loved dearly here. 

    Hugs

    Laura

  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2009

    Bette:

    Just checking to see how you are feeling.  I hope you and Tom have a great weekend.

    Hugs

    Laura 

  • cwrightrn
    cwrightrn Member Posts: 7
    edited October 2009

    Just wanted you all to know that Amber, who started this thread, lost her battle with cancer Wednesday night.  Her blog has been updated by her husband: amberchase.weebly.com

    Many of us have prayed for her and support her and sent cards.  Just wanted you to know 

  • bettelou68
    bettelou68 Member Posts: 151
    edited October 2009

    I was expecting the news about Amber, but am still deeply saddened.

    Still battling personally with lung, chest, skull and spine mets. A pain patch has been added that gives me better QOL. Hanging in with clinincal trial. 

    We must find a cure.

    Bette. 

  • g94u67
    g94u67 Member Posts: 91
    edited October 2009

    I am so saddened to hear the news of Amber and also our sister Fladay.

    God Bless you both.

    We must find a cure.

    Jeannine

  • cheers247
    cheers247 Member Posts: 57
    edited November 2009

    Bette, I'm wondering how you are doing, I pray for you daily!

  • ibjennifer125
    ibjennifer125 Member Posts: 15
    edited November 2009

    cheers247 you must be in the same clinical trial I am in. I take an IV of Zometa once a month. I am also on Aramidex for the next 5 yrs or so

  • cheers247
    cheers247 Member Posts: 57
    edited November 2009

    Hi Jennifer, I am in the Tumor Vaccine clinical trial at UW in Seattle.  I am getting Zometa, but not in the clinical trial.  Are you in the Vaccine trial??  Much Love, Jessica

  • ibjennifer125
    ibjennifer125 Member Posts: 15
    edited November 2009

    I'm in the biophosphanates clinical trial.

  • g94u67
    g94u67 Member Posts: 91
    edited November 2009

    Dear friends, 

    I wanted to let all of you know that Bette has been pulled from her clinical chemo trial.  It is not working for her.  She continues to experience severe pain in her spine and skull and after deep consideration with Tom, has decided to enter hospice.

    Tom has a goal of collecting 1000 cards for Bette by Thanksgiving. If you would like her address, please PM me.

    Jeannine

  • cheers247
    cheers247 Member Posts: 57
    edited November 2009

    Jeannine, Thank you so much for the update!  I sent you a PM.  My prayers are with Bette and her family.

  • lorieg
    lorieg Member Posts: 79
    edited November 2009

    I am sorry to hear about Bette.  Jeannine,  I just sent you a PM.

    -Lori

    IBC IIIc, diagnosed 8/21/09

  • ibjennifer125
    ibjennifer125 Member Posts: 15
    edited November 2009

    I want to let everyone know my DH and I met with my oncologist yesterday to go over the results of my recent scans. Praise to my Lord and Savior they were clear!   My stress level waiting for these tests has been through the roof....my BP was 160/90 before we went into his office.  It looks like I'm kicking it's butt and a survivor so far of Stage 3 IBC!   Into my 2nd chemo last Nov, my Dr told me my body was responding beautifully. So much has happened...I've been through some tough agressive chemo...my right breast removed...and 34 rads but I'm winning!

  • Caseysmom
    Caseysmom Member Posts: 70
    edited November 2009

    ibjenniffer:

    Congrats on clear scans!!!!!!!!! Laughing  

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited November 2009

    Bette here!

    Feeling better on painpump

    Thanks be to God for all His glorious gifts.

    I praise the Lord for all he has given us.

    Bette 

  • cheers247
    cheers247 Member Posts: 57
    edited November 2009

    Hi Bette!  I'm so glad your pain is better controlled!  I have been praying for you, and think of you all the time.  Thank you so much for all your support too, you have been such a help to me since my diagnosis.  Love and prayers, Jessica

  • Caseysmom
    Caseysmom Member Posts: 70
    edited November 2009

    Bette:

    Good to see you posting again.

    Hugs

    Laura 

  • g94u67
    g94u67 Member Posts: 91
    edited November 2009

    Friends,

    Please keep Bette in your prayers this week. Her daughter's husband passed away this week.

    Jeannine

  • ElaineM
    ElaineM Member Posts: 9
    edited November 2009

    You can find out a little about me by visiting http://langetc.tripod.com/elaine.html

    or http://langetc.tripod.com/health11.html

    ElaineM

  • cheers247
    cheers247 Member Posts: 57
    edited November 2009

    Hello ladies, I just wanted to update you about Bette, she's in long-term care for pain management now, hospice is seeing her there.  Tom says she's having fevers and is confused, partly becasue of meds and partly because of the cancer progression.  Tom is making funeral arrangements.  Please keep Bette and Tom in your prayers.  Much Love, Jessica

  • Chaparrita
    Chaparrita Member Posts: 3
    edited November 2009

    msx, if you read my bio you will see my story for diagnosis and my job, history, chemo and so on.  Sounds somewhat like yours.    Oh ya, thought I was going to die right off too, when you read about IBC there are such harrowing stories and poor survival rates.  Please, read my bio for hope.  Read clear to the end. Be Blessed.

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